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GUEST OPINION | Listening and compassion

We have shared many stories in this column about the inherent human value that people with developmental conditions bring to the classroom, the workplace and the community. And we have especially celebrated the wonders of inclusion — the way everyone’s best qualities seem to emerge when people of all abilities engage by learning and working together.

But I have recently been reminded yet again of the many daunting challenges faced by people with developmental disabilities and their families. Even as we recognize and embrace the benefits their unique perspective can bring to everyone around them, it is important to avoid glorification of conditions that no family I’ve ever met would have chosen if there had been an option.

For example, I recently met a woman whose two adult children both have severe developmental conditions. We were meeting to discuss the possibility of changes to our approach that we thought would enhance their chances of employment, increase their income and give them a more satisfying experience. Her angry reaction shocked me. “You try walking in my shoes for just one day,” she challenged me. “We’ll see how strong you really are.”

She went on to tell me her story, which was nothing about unique perspectives or qualities evoked but rather a total nightmare of impossible behaviors, violent seizures, a bureaucratic system of unimaginable complexity, skirting poverty as she devotes every waking minute to caring for her children while somehow trying to make ends meet — all while enduring looks of blame and disgust nearly everywhere she goes. This is what oppression does. It grinds people down to a point where they are tempted to agree with their oppressors. “Look at them,” she told me incredulously, “You think you are going to get them jobs?”

But as I continued to listen, she finally began to reveal small glimmers of hope. If only they could work closer to home. If only the right environment could be found. They have so much to offer; they really are very capable in the right situation. My willingness to listen seemed to generate trust, and soon the trickle of hope turned into a torrent. And she is so right — the burden she carries would crush me.

I felt something so important in this mother’s pain and fear, something at the core of what it means to be human. As the physician and author Rachel Naomi Remen says, “All suffering is like my suffering and all joy is like my joy.” So maybe by feeling this mother’s suffering so clearly and intensely, she helped me access my own self clearly and intensely. That we might be reluctant to acknowledge our own suffering if we can avoid it is completely understandable, and may help explain the objectification that can lead to oppression, not to mention those looks of blame and disgust.

Remen also notes that someone devoted to serving with its connotation of mutuality and equality, as opposed to helping with its connotation of power and superiority, “knows that he or she is being used and has a willingness to be used in the service of something greater, something essentially unknown.” How many of us are willing to be used, are willing to pursue “something essentially unknown” that requires us to confront our own humanity, our own vulnerability? Remen also points out that “when we help we may inadvertently take away from people more than we could ever give them; we may diminish their self-esteem, their sense of worth, integrity and wholeness.” How has this mother been diminished by her experience with a society that offers help (and often times precious little at that) rather than compassion?

The change activist Peggy Holman talks about “… the value of listening to understand, of bringing compassion — ‘suffering with’ — as [we] interact with others.” We all have the opportunity to enhance the lives of people around us as well as our own selves by honing these two skills to a fine art: listening to understand and compassion, the capacity to suffer with. The benefits of service are mutual; engagement among people of all abilities and all experiences evokes the best qualities of everyone involved.

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